Scapegoat: why we are still failing disabled people

 

In today’s blog-post, I want to link back to a chapter I wrote in my 2011 book, Scapegoat: why we are failing disabled people. In this book I investigated disability hate crime, but I also wanted to set it in its wider context. This chapter looks at that wider context – how our society views disabled people. I’m sorry to say that it’s still relevant today – no more so than at this time, when disability benefit cuts are in the news, and disabled people are protesting in the Commons.

 

 

 

 

Extract from Scapegoat: why we are failing disabled people (Portobello, 2011)

 

CHAPTER EIGHTEEN

Not Them but Us – society’s challenge

 

 

And then there is the whole vexed question of disability benefits, which have come under fire under successive governments, but never more so than now. Language about benefit “scroungers” is bandied about by politicians and tabloid journalists. As the Minister Iain Duncan Smith says, eagerly, work is “good” for you.[1] And so it is, in many circumstances, but it should not define our humanity. Not all disabled people can hold down a full-time job, but that does not mean that they do not contribute to society in other ways. As Sir Bert Massie, the former head of the Disability Rights Commission, says: “I think there is a strong argument to be made that there is an obligation to support those who need support and that should be unconditional, you can do what you want to the scroungers, but by and large, there are some people who cannot work, it is fanciful that everyone can work – you support them and you do it with magnanimity, this should be a right.”

 

Sophie Corlett from the mental health charity, Mind, says that many people on their advice lines are talking about changed attitudes towards them, since the government launched its crackdown. One person with a mental health condition told the charity: “Tabloids […] are actively […] encouraging people to shop the apparent easy-to-spot cheats directly to the paper. With mental illness, it is not that easy and this targeting feels unacceptable. I fear this will increase hate crime and further alienate those with mental illness who are on benefits.” Another said, movingly, that life was now “barely tolerable” and added that they felt like an “object of hate and derision with no escape. I worked for as long as my body could stand it and I do not need someone with no comprehension of my daily life, telling me that I am a ‘scrounger’ and languishing on benefits”, adding that many with hidden disabilities now find themselves “the victims of an orchestrated hate campaign and what I can only describe as institutional bullying.” As Mind’s submission to the EHRC inquiry puts it: “People with mental health problems already face disproportionate levels of crime and discrimination and now appear to be the scapegoats for the Government’s welfare reform programme.”

 

It is easy to see, in the light of such comments, why some disabled people are so afraid at the moment. They feel that the population is being softened up for ever more punitive action against them as a group. For many, this has a historical resonance with what happened in Germany, before the Holocaust.

 

When the Treasury website invited comments from the general public on how to reduce welfare spending, the comments about disabled people (which were not moderated) were vicious. One argued that all disabled people should be sterilised. Another said: “depression is not a disability, neither is stupidity.” Many suggested that disabled people got too many perks and were particularly exercised about disabled car parking spaces.[2] Another suggested, extraordinarily, that disabled people should be used as weapons of war. “Those who can work that upon rigorous medical examination turn out to be just thick or bone idle to undertake intesnive (sic) course in employability, where they will learn to be punctual, meticulous, smartly dressed, articulate, and gain working attitude. Those who repeatedly fail the course to be deployed in Afghanistan as IED deterrents.”

 

Although, after repeated requests, the website was closed down the comments removed, they shed light on attitudes among many in society.[3] Disabled people are not seen as equal citizens. They are seen as a useless burden. Small wonder then, that so many of them are attacked – the perpetrators are merely acting out the unconscious wishes and desires of many in society.[4]

 

From the moment they are born, as the psychotherapist Valerie Sinason has said, eloquently, they are told that their lives are not worth living – they face what she calls an “internal and external death wish”.[5] If they want to have sex, marry, or have children, their decisions are seen as controversial, and their children are more likely to be taken away from them than non-disabled families. Then they are told that they should not have benefits wasted on them. That they should go into a home, or if they can’t work have their benefits cut. If they can work they should also have their benefits cut, as they clearly don’t require extra support. Then, as they get older, they are told that they are a burden on society and should die for the sake of others. If we do not understand these widely held views, the spirit of our times, in which hate crime has flourished in our society, we are never going to be able to understand it, and we won’t be able to find solutions.

 

 

 

 

 

[1] http://www.telegraph.co.uk/news/newstopics/politics/conservative/8114432/Iain-Duncan-Smith-My-welfare-reforms-are-Beveridge-for-today-with-a-hint-of-Tebbit.html

[2] Personal communication, John Pring and Anne Novis, November 2010

[3] http://www.disabledgo.com/blog/2010/07/treasury-fails-to-remove-disablist-comments-from-cuts-website/

[4] http://www.prospectmagazine.co.uk/2010/10/wrong-thinking-on-disability-fraud/

[5] Sinason, Handicap and the Human Condition, 38

 

Chapter 19: Ways Forward

Nepal 2

Sherpa film review and remembering a trip to Nepal

In August 1975 our family flew to Kathmandu to visit my uncle, Andrew Quarmby, an aid worker and film-maker, his wife Diana and our cousin Sarah. Andrew and my dad, Michael, had been keen walkers since their days growing up in hill-country in Yorkshire, as sons of farmers. Now they wanted to take all of us on a trail that was only just unfolding – all the way to the village of Kunde, near Khumjung, nestled just a few miles below Everest Base Camp. My dad and uncle were to walk on to Base Camp, whilst the rest of us stayed there.

We had moved to the flattest of counties, Norfolk, when my dad got a headship there, a year or so earlier. This made training for walking in the Himalayas a little tricky. There was one slope, which my mum and dad thought would do. We would trek up and down it, twenty or thirty times after school, and if we did well we would be given Maryland cookies as a reward. We had to save our money (our parents were teachers, so didn’t have a lot of cash) so we had very small baths for many months before the big trip. We took with us a lot of Beanfeast dried food (mmm) and dried porridge. (This later became my moment of triumph, as a porridge refusenik. As I rejected it, near starvation, consistently, every day on a 20 mile trek in the Himalayas, I was eventually allowed to bow out of daily porridge at home when we returned. I have never eaten it since.)

We arrived in Kathmandu in summer 1975 – monsoon season. We were staying with Andrew and Diana, and their housekeepers, Nema and Pemba, who were Sherpas. They were to accompany us on our travels to Khunde and Khumjung, and hired other Sherpas to come with us as well. I loved Nema and Pemba, who became real friends to us, as they were to Andrew, Diana and Sarah. I don’t remember when we set out from Kathmandu, but I remember that we walked around 20 miles a day. I was nine years old, and my cousin Sarah, only seven. My brothers were just a few years older. Sarah, the youngest, never complained and like me, was only ever carried across rivers where the current was too strong for us to ford. I can still remember Sherpas fording them for us with a rope and then my dad and Andrew and the boys using the rope to guide themselves across. I remember one day, my foot covered in blisters, feeling too sore to carry on, on a high mountain track, and stopping with my dad. I don’t know how long we were on our own, as the others walked on, but I was grateful for that time he spent with me, when I just couldn’t walk any further.

Then there were the leeches, which sucked our blood, voraciously. My mum, being close to a Buddhist, would let them take their fill and drop off. The Sherpas would touch them with a cigarette and watch them drop off. My brother John, now a doctor, would watch them approach him, half horrified, half fascinated. My brother Chris, who was always hungry, was particularly interested in explorer Chris Bonington’s expedition, hurrying along ahead of us, and dropping Spangles wrappers as it went. Sometimes he would catch them up and beg them for food. There were a few bad days when ‘our’ Sherpas went on strike as Chris Bonington was paying ‘his’ Sherpas more, apparently. It all got sorted out, but even then, money and fair conditions were an issue. As of course they should be.

Which brings us on to the wonderful, evocative film Sherpa, which is rightly nominated for a Bafta (winners to be announced on 14 February). This beautifully shot and observed film gives Sherpas back their rightful place in Nepalese history and culture, centering on the 2014 climbing season, from the Sherpa point of view. That sharpened when an avalanche down Everest’s Khumbu’s Icefall killed 16 Sherpas. The government reaction (at first) was inadequate – even pitiful. The film also discussed the confrontation the year before between Sherpas and climbers and went back in time to the first ever ascent of Everest (at least by a Westerner with a Sherpa) in 1953, by Tenzing Norgay and Edmund Hillary. We don’t seem to have matured much since then. I certainly felt, at the film’s end, that we in the West need to step back from our interest in ‘conquering’ Everest, or Chomolungma as the Sherpas call it, and ask ourselves why some think they need to get to the top – especially when it means risking lives. Why can’t tourism be more sustainable? Why can’t there be more treks in the Himalayas that don’t go all the way to the top? Why do the tour guides refer to Sherpas as ‘boys’ – which certainly resonated to me, and not in a good way – with one person who had been paid to get to the top even asking about why a tour organiser couldn’t speak to the ‘owner’ of a supposed trouble-maker?

I realise, looking back, how lucky we were to have an uncle and parents who didn’t have money, but who did give us the opportunity to trek in the Himalayas as children, albeit on Beanfeast and local food, rather than shelling out £50,000 for an organised tour. I still remember so much of what we did – playing for hours with local children in Kunde, with bits of film rejected from the local hospital, staying in local houses where the smoke got in your eyes, eating chickens that you had seen killed just a few hours earlier, drinking the local salty tea, the beautiful local temples and prayer flags and the lush green scenery that always, always hid a leech. My dad and uncle never made it to Everest Base Camp – my uncle developed malaria. They got within sight of it, and then they turned back, and my dad helped his younger brother off the mountain, as he sickened. They both made it down alive.

Sherpa deserves to win a Bafta, because it treats the Nepalese people with respect and it sets Everest and those who want to climb in a wider, more universal context. The struggle the Sherpas are going through to determine their destiny is mirrored in other struggles around the world.  This beautifully crafted film captures the perplexity of so many of us in the West when we are faced with old stereotypes – ‘happy smiling Sherpas’, as one organiser put it, falling away and being replaced by reality – Sherpas demanding what we demand for ourselves – respect.

 

 

 

 

 

 

Remembering the Holocaust – and the disabled victims who died in the T4 programme

Katharine Quarmby

In this extract from my book, Scapegoat: why we are failing disabled people (Portobello, 2011), on Holocaust Memorial Day, I am sharing my analysis of how the T4 Nazi killing machine was inspired by eugenics enthusiasts in the UK and the US. It’s a grim read, I’m afraid, but important to remember why so many people died. Never again.

Extract from: Scapegoat: why we are failing disabled people (Portobello, 2011)

by Katharine Quarmby

The legitimisation of eugenic views through Europe and American ended in a logical, if horrifying outcome: the systematic murder of thousands of disabled people in Germany, after the Nazis came to power in 1933. The National Socialist Party wanted to create a pure Aryan nation, and eradicate the taint of the Jewish people (as well as homosexuals and gypsies) But a lesser known part of their moral thought was that “degenerate”, impaired Aryans should also be eliminated…

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Remembering the Holocaust – and the Roma who died amongst the many victims

Katharine Quarmby

I have been very moved by the many wonderful contributions to Holocaust Memorial Day, all around the world.

Here’s my contribution – a short extract from my book, No Place to Call Home: Inside the Real Lives of Gypsies and Travellers, published by Oneworld Publications in 2013. It contains a passage about the lesser known history of the Roma who perished during the Holocaust, along with all the other victims. I will also be publishing an extract from my book, Scapegoat: how we are failing disabled people (Portobello, 2011), today, which has a short section on the disabled people who were victims of the Holocaust, under the T4 killing programme.

Extract from No Place to Call Home: Inside the Real Lives of Gypsies and Travellers (Oneworld Publications, 2013)

by Katharine Quarmby

 No reproduction without permission from publishers

The hatred of the Roma people, intense enough in the UK…

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House of Lords reform – my IPPR paper, Straight To The Senate (1997)

I dug this it out of a cupboard today and dusted it down – so many of the arguments about the legitimacy of the second chamber still hold true today. When I worked as a researcher for the Labour leader and front-bench in the House of Lords in the mid-nineties, we spent a lot of time amending hastily drafted and often draconian bills sent up from the Commons – and sometimes our amendments even survived going back to the Commons. But, of course, the fact that the Lords was not elected always meant it was hobbled – until this week. My argument, in 1997, that we needed an elected second chamber (and, in hindsight, it was a grave error of the Blair government not to push straight for this), is still true today, I believe.

Here’s the paper – one of two that the Institute for Public Policy Research published – the other from John Osmond, then Director of the Institute for Welsh Affairs. I haven’t included his for copyright reasons.

straighttothesenate

Assisted suicide – the arguments

Today Members of Parliament will vote on the Second Reading of a Bill which would, if passed, legalise assisted suicide (or dying, if you prefer), in the UK. It is estimated that, if passed, it would mean that around 1,500 would be ‘helped to die’ if it became law.

In 2010 I wrote an article for The Economist that rehearsed the arguments for and against assisted suicide (or dying, I’m trying to be even-handed here). So here’s a few extracts from the piece again –  which looks briefly at the state of play in Oregon, on which the bill is largely modelled and the Netherlands.

I’m still sceptical, for what it’s worth. I like the fact that the guidelines introduced in 2010 honour the love and affection of those who take difficult decisions about those they love and feel under unbearable pressure to help them die (we have no idea what we would do in similar situations) but do not give carte blanche to everyone to get rid of elderly or disabled relations who they just don’t want around any more. Case by case – it just seems a better way to look at this difficult area.

The Economist – July 1, 2010

THE argument over the ethics of assisting the terminally ill to die is sharpening, as two recent cases concentrate minds. On June 25th Keir Starmer, the director of public prosecutions, said that Michael Irwin and Alan Cutkelvin Rees would not be prosecuted for helping Raymond Cutkelvin, who had pancreatic cancer, die at a Swiss clinic in 2007. Prosecuting would not be in the public interest, he held: Mr Rees was motivated by compassion; Mr Irwin, a former doctor, was an elderly man; and neither had profited from the death.

At issue is whether it should be legal to help a sufferer who wants to take his own life, or whether this might put pressure on the sick, the disabled and the elderly to call it quits early. In February the Crown Prosecution Service (CPS) issued new guidelines on when someone might expect to be prosecuted for assisting suicide. Debbie Purdy, who has multiple sclerosis, had asked the courts to clarify whether her husband would be prosecuted if the couple travelled to Dignitas, a clinic in Switzerland, to end her life. Mr Starmer stressed that the guidelines did not decriminalise assisting someone to die or “open the door to euthanasia”, and that no case was absolutely prosecution-proof. But all sides welcomed the new stress on a suspect’s motivation.

Sir Ken Macdonald, Mr Starmer’s predecessor, likes the new guidelines, saying that they protect people at a vulnerable time in their lives who may feel they are a burden on their families. Like many lawmakers and doctors, he wants the door left open for prosecution, though he says that in practice few are or should be pursued.But many think the law should give greater certainty. Around 100 Britons have trekked to Switzerland to end their days at Dignitas. Other places too permit some form of assisted suicide, including Belgium and the Netherlands and two American states (Oregon and Washington).

Sarah Wootton, the chief executive of Dignity in Dying, a pressure group, points to polls showing that most Britons (including, she says, many disabled people) want a change in law. She argues that assisted dying can be regulated so that it does not endanger the vulnerable. The charity supported an unsuccessful member’s bill in the House of Lords in 2006 which proposed safeguards including a medical assessment by two doctors. A similar proposal last year by Lord Falconer, a former Lord Chancellor, also got nowhere.

Jane Campbell, a disabled peer who chairs the group Not Dead Yet UK, sees things differently. She acknowledges that there “might come a time” when legalisation could be considered. But now is not that time, she argues, because disabled people and those with terminal illness are seen, not as equal members of society, but as a “burden” on the scarce resources of the National Health Service.

A professor of palliative care, Ilora Finlay, also a peer, agrees. She says that better care at the end of life, including advances in pain relief, should allow more people to die naturally. She points to the increase in the number of those seeking an assisted death in Oregon, where it has gone up nearly fourfold since legalisation, and in the Netherlands, where it increased by 13% last year, with a significant rise the year before. (The increase in deaths has triggered an investigation by the health ministry.)

For all their differences, people on both sides of the argument agree that the new CPS guidelines are better than the vacuum they filled, and that clearer thinking about end-of-life care is welcome. But the tussle over assisted suicide will not go away. The Royal Society of Medicine devoted a day to it this week, and a decision on whether Dr Martin is to be prosecuted is expected soon. And once a country has legalised assisted dying the issue is not always laid to rest. Campaigners in the Netherlands are now pushing for elderly people who are “tired of life” to be helped to die too.

ends

Book Review: Jewels of Allah, by Nina Ansary

As Iran and the West enter a detente phase, this subtle, intelligent book offers compelling insight into the role of women in Iran. Nina Ansary, an Iranian academic living in the US since middle childhood when she left her homeland at the onset of the Iranian revolution, concentrates on the situation from that crucial point onwards, but, crucially, also looks back at how women in Iran have sometimes enjoyed emancipation in the past. She brings to life women from Iran’s past, who have held powerful positions in the military, the judiciary and as businesswomen.

Ansary expresses an inconvenient truth – although women were emancipated in law by the Pahlavi regime, in truth because cultural mores had not caught up, the top-down policies did not work as well as had been hoped. The veil was banned, for example, but instead of emancipating all women, many stayed at home rather than venture forth without head-cover – thus driving them back into the home, rather than the objective. She draws attention to the ironic paradox that whilst women’s roles were supposed to be circumscribed by the Islamic Revolution in 1979, in many ways women continued to struggle for freedom and some of the steps the mullahs took underpinned that. (She also discusses the irony of the fact that many women, including feminists, joined the revolution against the Shah – and then regretted it.) The reintroduction of the veil, for example, meant that girls and women from stricter households could venture forth yet again – and did, in increasing numbers, meaning that they had access, crucially, to education. As Ansary says:

“The fact is that the so-called Islamization of education has proven to be responsible for generating unprecedented educational gains for the vast majority of the female population.” Classrooms were strictly segregated, leading to the unintended consequence that girls could learn, undisturbed by the demands of male pupils. Ansary also points out that textbooks were hardly changed, and continued to showcase women in professional roles, giving girls role models to which to aspire.

Girls and women, behind the Islamic curtain, continued their struggle, despite the threats of imprisonment in horrific prisons (in one of which, Evin prison, my own birth father was imprisoned for several years after the Revolution). Their role was bolstered during the Iran-Iraq war, Ansary also notes, when women filled the roles of men fighting on the fronts. As Ansary says:

“Perhaps the government’s failed ideology has been most obvious to a defiant female population that continues to boldly protest their enforced status of inferiority.” Girls and women played a crucial role in the 2009 uprisings, as Ansary says, despite all odds. Women also continued to run a number of important magazines – also crucial because women from all backgrounds, secular and religious, have worked together to combat misogyny. Ansary’s understanding of Islamic feminism is crucial to this middle section of the book.

This is an engaging, fascinating and beautifully written book, countering, as Ansary writes, “convenient half-truths” and expressing instead, as Ansary says, “the audacious history of women in Iran”. Anyone seeking to understand the troubled history of Iran should read it.

I read it with great interest, both as a feminist and as someone with Iranian roots through my birth father (and am grateful for receiving a review copy from the publishers). It gave me insight into the life of my birth family in Iran, in which women in the family had to see members in prison (and one executed) and were stifled, like others, as women.

The book started its life as an academic thesis, and as such is fully footnoted and rigorous. However, it is also engaging in its tone and suitable for all readers. I recommend it whole-heartedly.

Jewels of Allah, by Nina Ansary, published by Revela Press.

http://www.amazon.co.uk/Jewels-Allah-Untold-Story-Women/dp/0986406406/ref=tmm_hrd_title_0?ie=UTF8&qid=1441283615&sr=8-1

Katharine’s own book, Blood and Water, about her search for her Iranian birth family, can be found here:

http://www.amazon.co.uk/Blood-Water-Anglo-Iranian-Kindle-Single-ebook/dp/B00E00BEZQ/ref=asap_bc?ie=UTF8